An Episcopal (Anglican) Chaplain in the Saint Luke's Health System of Kansas City, reflecting on work and faith and life. NOTA BENE: my opinions are my own and do not represent the Episcopal Church or the Saint Luke's Health System.

Monday, February 04, 2008

High Hopes and Hard Choices

This story was published this Saturday in The Kansas City Star. It’s an interesting human-interest story. A baby has a debilitating genetic disorder that would in the normal course of things lead to discomfort and disability, and ultimately to death at a young age. He is being treated with a drug known in older children to relieve symptoms and slow progression of the disease. He is the youngest person ever to be treated, and the whole world, or at least the world of those who live with and those who treat his rare condition, it watching. The hope is that starting treatment earlier will prevent progression of the disease in the first place.

Many people are certainly hopeful. However, there is an ethical issue in this, one that, while not our favorite thing to talk about, won’t go away. It is this: the drug, received weekly through intravenous infusions, costs about $300,000 a year for each child treated. The child can expect to receive this treatment indefinitely. Now, this child’s family has insurance – apparently good insurance – and it appears the treatment is actually covered.

At the same time, $300,000 a year is a lot of money. Even with good insurance, the copays on that have to add up. In addition, most insurance programs I’ve experienced have a maximum lifetime expense. At that rate, we could worry about hitting that maximum pretty quickly.

And we are all paying. Like all other businesses, insurance companies raise their charges to cover losses. So, everyone with that company is paying some small increase – negligible, but still there – to cover this child’s treatment. And of course other companies are watching. I wouldn’t suggest their colluding. I would suggest they’re thinking in this case and/or cases like it what they would need to charge to cover such losses; and so all our premiums go up.

We’re also paying in another, more serious way. Money is fungible, but it’s not unlimited. That is, money spent one place isn’t there to spend somewhere else.

Not quite 30 years ago now I was in my first CPE residency in a pediatric referral hospital. While I was there, a boy was discharged from the intensive care unit. He had lived there from a few hours after his birth until just after his fourth birthday. He had an incomplete airway that required a tracheotomy and a ventilator; and he was only able to leave the hospital now because the portable ventilator had just been invented. We’re used these days to seeing folks almost everywhere with their small oxygen bottles. But in the spring of 1981 they were brand new.

The Pastoral Care Department sat together at the end of the day, a day or two after his discharge. The Director spoke about it: “This child was sent home today after living for four years in the intensive care unit of the hospital. Each of those four years the hospital wrote off $250,000. That was after all that the parents’ insurance could pay, and then after what they could pay, and then what Medicaid could pay: $250,000 a year. No one wants to put a price on that child’s life. At the same time, how many other children could the hospital have treated in those four years with $1,000,000?”

Now, I suppose in real terms $300,000 in 2008 isn’t near as big in purchasing power as $250,000 in 1980. At the same time, whether it’s a measure of what the insurer could do, or what the institution could do, how many children could be treated for $300,000 a year? If the treatment works, and he lives for decades, how many children could be treated?

I grant that with some conditions, proving this treatment works would eventually bring down the cost of the medication. If it works, it could serve lots of people, at least in theory. However, this child has a condition that affects only 1 in 100,000 births. Let’s do some math here: in 2002 there were just over 4,000,000 births. So, the condition this child has would have affected in that year about 40 children in the United States. I have written elsewhere about “orphan diseases,” those affecting so few patients that the medication is never profitable for the pharmaceutical companies, and so ultimately not produced, or produced only under special circumstances. I fear this would fall into that category. This is one I fear would not become cheaper, at least under the circumstances of our profit-driven pharmaceutical industry.

“We would not want to put a price on this child’s life,” as my supervisor said so long ago; but in fact we have. This child’s life is worth just over $300,000. And, in consequence, we have put prices on the lives of other children; because money we spend in one place we don’t have to spend in others. Money spent on this child we don’t have to spend on other patients, both children and adults, with conditions both rare and common.

While there are many issues I think would be significantly helped by universal access to tax-supported health care, this isn’t one of them. A major criticism in any discussion of universal access to health care has been, “You’re going to get into rationing care!” Well, in this care the concern is certainly apt. Since the money is not unlimited, there would be some decisions to be made, and as they inevitably came to apply to individual patients, those decisions would be hard to make and hard to bear.

But of course that ignores the fact that we ration care now. I have to wonder whether this child would be receiving this treatment if he were in a State Children’s Health Insurance Program (SCHIP). I wonder whether he would be receiving it if his parents qualified for Medicaid. Since the article explicitly states they waited to learn about insurance coverage, I wonder whether he would be receiving it if his father were a carpenter or a plumber, working as a contractor, with no job-provided health insurance. We are already rationing care. We just don’t like to think about it.

But this child is being treated. These parents pursued this; and if he were my child, I can imagine I would, too. At the same time, he does highlight an issue in health care, one that won’t go away. Money is fungible, and that has a negative as well as a positive effect: money we spend in one place we don’t have to spend in another. We have put a price on this child’s life, and in consequence we have put prices on the lives and health of other children. For this child, for any child – virtually for any patient – we never want to say, “No.” But, for how long – for how many – can we say, “Yes?”